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Wanting Out

I don’t think I’ve ever elevated a comment to post-of-its-own status, but one of the comments on my previous post references a subject that deserves coverage:

We seem to be in the same boat of pain right now. I cried all the way in to work today and I’ve cried all morning long. I hate the painkillers because they make me too sleepy to work, but I hate the pain. The Humira doesn’t last long enough. The steroid shots don’t work the way they’re supposed to, and the prednisone isn’t doing the trick. The mtx is just there.

Sometimes I just want to die and get it over with. Of course, I’d never do anything to make that happen, but if I keel over one day I will for sure have a DNR in place. This is hell on earth.

This is something that isn’t talked about as much as it should be. Being sick isn’t for sissies.

It’s not just the expense of medicine and doctor’s appointments. It’s the frustration of going to a doctor for help and being given pills that might or might-not help, but won’t take effect for at least eight weeks. It’s being expected to live with the pain for another two or three months before a decision is made on whether or not to try a different treatment – and that treatment, too, will take a few months to kick in. It’s having no support and no idea what to expect.

It’s the time involved in obtaining treatment. It’s the new wardrobe needed so we can dress ourselves without assistance. It’s the loss of friends who can’t deal with reality. It’s the pain, ongoing, with no end in sight. It’s the fear of not being able to participate as fully as we’d like in raising our children. It’s the anger at the curve life has thrown at us. It’s the sense of unfairness in having our own bodies turn on us. It’s the hopelessness in realizing that we will never get well.

It’s not surprising that thoughts turn to ways of escaping the pain. This does NOT mean that people dealing with such thoughts are weak.

When we lose a loved one, we grieve. It is perfectly normal to also grieve the loss of our health. Grieving loss is normal, and just as we can recover from the death of a dear friend or loved one, we can recover from other losses in life.

It’s natural to want out, but we press on.

One of the best things we can do is to exercise. I know, it’s hard. Too many people use pain as an excuse (I’m one of them). However, I tell myself, “I hurt anyway, so I might as well do it. At least then I’ll feel better.” It works. Exercising releases chemicals that lift our mood.

Another strategy is to get a second opinion. If treatments aren’t working, maybe the diagnosis is wrong and someone needs to take a look at the data with a fresh set of eyes. Or maybe the diagnosis is right, but the treatment plan needs to be adjusted.

If the normal methods of dealing with grief don’t work, maybe antidepressants would be helpful. There are options.

Everyone deals with these issues differently. The key is that we need to deal with them.

Once again you’ve zeroed right in on an aspect of RA all of us experience at some time or another, whether we’re open about it or not. And of course, you’re right, Socks. There is hope, always hope: that in an hour, or a day, the current flare will end and our pain will be lessened or even gone for a while; that medical science will discover a new drug that treats the disease AND the pain more efficiently; that they’ll even (dare we think it) discover a cure–not in 20 or 30 years, but today. And that we’ll be able to benefit from it.

Thank you for writing such an eloquent and profound post about the despair that always hovers in the background for those of us with autoimmune arthritis.

I just wanted to share something about myself that may be quite pertinent to this topic.

An autoimmune, chronic and painful disease like RA can be hard to deal with. We eventually learn of ways to cope, and learn of ways to empower ourselves to make the best out of this disease.

I was only 17 when I was diagnosed, after struggling with JRA for my entire childhood. I found ways to cope and made it my mantra to find a gift in RA. More so after I started to go to nursing school.

I was coping alright for some 4 years, until I fell into depression. And although RA wasn’t the precursor to the depression, I realised on hindsight that RA contributed a lot to the onset of depression.

I have never been in remission, I struggled as a student working part-time to pay for my treatment, I had several episodes where I am off all meds due to transaminitis, I’ve had days when I had to drag myself to school/work even though I was literally dying because of the pain, I pushed through with ballet despite all the disease activity, the prednisolone I took for a full year caused weight gain which indirectly led to me developing an eating disorder, and I eventually stopped dancing because of these reasons even though dancing was my life. I also faced issues with stigmatization as a nursing student looking for an employer who was willing to hire me, as well as when I needed concessions doing CPR because of the limitations in my wrists.

and i thought i was coping. i wasn’t. being in depression for over a year now and still facing many issues with my RA, eating disorder and self-harm, I can understand how difficult it can become when it seems unrelenting and endless. And when it all seems futile, it is natural to want out.

I don’t have any suggestions, and it is tough to believe that there is hope when it seems so hopeless. But I guess what keeps me going in terms of RA, is the knowing that having RA teaches me so much and humbles me a great deal. It teaches me so many life lessons that not many other people have learnt, and it makes me a much better person, as well as a nurse. I could elaborate, but not here.🙂

Thanks for actually writing about this. It is an often forgotten topic, as our rheumys and ourselves try so hard to tackle the physical symptoms of RA.

Sorry to have scared anyone. I was at the end of my rope (figuratively, not literally) after a two-week straight-from-the-pit-of-hell flare. The doctors couldn’t do anything for me. Steroids, prednisone, nothing seemed to help. I was in so much pain and so depressed because of it I didn’t care if I was hit by a bus the next minute.

And I KNOW some of you have felt the same way if you have RA. You can’t help but feel that way sometimes.

Would I off myself? NEVER. EVER. I could never see causing my family so much pain because I’m in pain and can’t handle it, so I’ll stick it out until my time comes. Suicide is never an option.

Would I complain if God took me home tomorrow? NOT ON YOUR LIFE. Momma didn’t raise no dummies.

Is it sad that I feel this way? Maybe. And then again, maybe it makes me appreciate Heaven just that much more.

I think you have voiced the opinion of many of us, and that often goes whether or not we are in the worst flare of our lives or it’s just an ‘ordinary’ day. I just told someone the other night that I wouldn’t complain if God took me tomorrow. And no, I’m not suicidal either. I have others depending on me, so no going there.

Thank you for putting to words what sometimes rumbles around in my head in various times in my life. I have always considered myself a pretty tough cookie with a high pain tolerance. I agree – being sick isn’t for sissies. Thanks for posting.

It is all true! But what has frustrated me beyond words is the lack of pain treatment currently given by rheumatologists and the fact that many still put the stigma on ra patients that if they need narcotic pain medications then they are addicts. Our society needs to learn that treating pain is compassionate and the humane thing to do! Of course one is going to get depressed if one is in chronic pain. Cancer has strict protocol for treatment of pain so that depression is avoided as much as possible…why not ra? This is squarely where this concern should rest. With the doctors treating our condition. They need to grow up, put up and start treating ra pain head on. There needs to be a protocol written for all doctors and patients to discuss so that we know what to do if we get in the severe pain that often comes with ra. Being left alone to try and cope with such pain is not acceptable and the excuse that a doctor doesn’t want to deal with the pain issues is ridiculous. This is the topic that needs to be addressed because if ra pain were being treated correctly chances are there would be very little if any depression. It is those poor patients with inadequate pain treatment that seem to be the ones with severe depression and rightly so. Are the doctors listening? Are they willing to be proactive at last in this arena of ra?

Wonderful post Socks. I have often thought of getting a diagnosis of ra like starting a marathon and then finding out midway through that there is no end to the race. It just goes on and on and on. Of course we all just have to keep on running and hope for better treatments. I was recently diagnosed with a rather rare neurological disease that has no cure. It felt like someone had added a 500 lb weight to my shoulders and now I have to just continue to run with this added weight. Ugh… the first few months after this second diagnosis were tough (talk about depressed) but we all have to get back up and continue to move forward and hope for the best.
I think a certain amount of depression is normal as we grieve for lost health and ability. I would wonder about the person who wasn’t, at times, depressed. The trick as you point out is to try and find the things you love that you can still do. If the depression becomes too difficult to cope seek help.

Terrific post Socks. I am taking this: However, I tell myself, ”I hurt anyway, so I might as well do it. At least then I’ll feel better.” for inspiration. You are SO very right about the excuses and the way you put it in perspective is refreshing. Thank you.

This post is about as real as it gets. It hits home with me and I suspect many others as well. We fight fatigue and pain everyday, but are expected to compete in life at standards set by healthy people. When I was diagnosed I was hurting so bad that I prayed to die. I had never understood why terminally ill patients would want to end their life until that moment in my life. I’m thankful that God didn’t grant me my request, but you don’t understand this until you have lived it.

The last comment hit home if only we new what to expect. I started on metatrexate first like most of us, it made me sick as a dog… moved to hummara for 6 month I thought I was curred then it just quit working on to ebrel no relief, on to symponi got a littel better 6 months quit working, now on my third month of actemera right after the third infusion my knuckles started blistering then woke up with my feet broken out and itching which spread, the doc put me on a dose pak and now I have thrush in my mouth and throat. I would rather just deal with the pain… I am planning on going back to just the plaquenil, and Arava I have been so weak and nauseaus since I started the actemra. I keep thinking this will just go away but it just gets worse I would not every hurt myself because I do have a great family, it does help to read how others cope.